So I'm not pregnant, or planning to get pregnant, for a very long time, but I just got diagnosed with NCGI (though it's possible I could be celiac, I suppose, due to testing malfunctions). I was wondering if anyone with gluten sensitivity/NCGI had problems with fertility...I know it's an issue with celiac, but anything else?

So I'm not pregnant, or planning to get pregnant, for a very long time, but I just got diagnosed with NCGI (though it's possible I could be celiac, I suppose, due to testing malfunctions). I was wondering if anyone with gluten sensitivity/NCGI had problems with fertility...I know it's an issue with celiac, but anything else?

Are you concerned because you've noticed changes in your cycle? Because that was one of the reasons that I went gluten-free to begin with. Ultimately the short answer to your question is...yes. There are many of us who have had problems with fertility with or without an official celiac diagnosis. I am self-diagnosed Celiac (my grandfather was diagnosed and I carry both a Celiac and non-celiac gluten sensitivity gene) but my blood tests were negative since I'd already started the gluten-free diet before I was tested and my doctor believes that I am NCGI. Personally, one of the reasons that I went gluten-free was to see if it would help regulate my period. Unfortunately, while my overall health improved drastically since I changed my diet. I still ended up being diagnosed with primary ovarian insufficiency (or POF-Premature Ovarian Failure as it's commonly called) at age 32.

Here's my story with regards to that. I started having trouble with irregularity when I was about 28 1/2 years old. My cycle shortened from 29 days like clockwork to every three weeks (in addition to suffering from hot flashes, terrible night sweats, loss of libido, urinary frequency and dryness). After having my blood tested a couple of times over the past three years (and coming back normal each time) I ended up getting abnormal results the last time around as I was preparing to begin trying to get pregnant. What truly indicated the POF for me was not the high FSH but the measurement of my Anti-mullerian hormones or AMH and the fact that I am not ovulating and probably haven't been for a while. Recent studies have shown AMH to be a better indicator of ovarian reserves than FSH. Normal women at my age (32) are around a 3 or 4. When tested my AMH was at 0.11 and then even lower when they re-did the test. When you get to 0 there are no egg follicles left. (When the Dr. ultrasounded my ovaries I had no follicles in my right ovary and only 3 in the left...also consistent with the diagnosis) AMH is a newer test that wasn't in use frequently three years ago...so my regular doctor wouldn't have known to use it. Currently, I am still having periods, but my FSH is above normal (though not yet fully menopausal) and both my estrogen and testosterone levels are low. I was told that my only hope of getting pregnant would be to use donor eggs and IVF since my odds were less than 2% if I was going to try to use the few remaining follicles that I have.

Fortunately, or unfortunately for me (depending on how you look at the situation) I am in a lesbian relationship which makes access to sperm extremly difficult, but access to a second uterus par for the course. In light of our situation, I have decided not to pursue IVF with egg donation at this time (Even though our HMO insurance in Illinois would have covered the vast majority of the costs! Amazing...simply amazing. Illinois is one of only 6 states to mandate infertility coverage including IVF in health insurance). If I had done the egg donation, my wife would have been my donor...but after reviewing the possible side effects of IVF we decided that we'd be better off if she carried the babies rather than me getting pregnant and risking triggering any additional auto-immune problems.

I'm sorry to throw my sob-story at you...but I needed to get it off my chest and perhaps find a way to encourage you to be your own best advocate. I was worried for years and kept hearing "you're young and healthy." from my doctors. Sure, I am young. And I'm much healthier than I've ever been...but that doesn't mean that I didn't know when something was off in my body. You are the best judge of your situation. If you have concerns, listen to your intuition and don't wait to start trying (if you can). If it is not a good time for you to be pregnant now, but you still think you want kids. Actively pursue a good relationship with your doctor and consider checking your AMH in addition to your FSH, Estradiol, and LH. The AMH levels will let you know whether or not you have a good amount of follicles in reserve. The higher your number, the "younger" your ovaries are and the more time you can wait. Blessings and good luck to you!